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When your workday is twelve hours (including commuting commuting commuting on a most unreliable freeway) you don't get much done besides your work. And this is even taking into account that my "work" is hanging out with a friend, taking her to the hairdresser's, the bank, the movies (we saw "Must Love DOgs" today and "March of the Penguins" last week), restaurants, stores . . . notably the Capitola Book Cafe where the science magazines are all nestled in this one cozy corner (the magazine section at this bookstore has tripled in size over the years. And I thought magazines were dead, more or less?). Yes, although Gloria can't read beyond the single word level anymore, she still prefers science magazines and newspapers for her something-like-reading. So I don't have any new writing progress to mark for myself, but I have been working on a books of sorts.
Gloria's condition is not sequel to a stroke, after all, as she had been suffering from language loss before the stroke. They call it Primary Progressive Aphasia. If you ever see "primary" in a disease, it means "we don't have the slightest clue in the universe as to what causes this thing." "Progressive" means "it gets worse and worse until you die." It's different from Alzheimer's in rather significant ways. The most important one is that she has not lost her memory and she has not lost the capacity to form new memories -- that is, she can learn things. This has consequences. Good ones -- we can establish new routines to fit changing circumstances. She can learn names of new people (and I, for her purposes, had become a new person). Bad ones -- she can hold grudges. She can hold on to plans or ideas that you wish she wouldn't. SHe has this idea that everything would be much better if she could just withdraw all her money at once and have it in a little pile to give to her children and anybody else she fancies (including me, which is an icky thought, if you think about it). Money denominations are a vague concept to her now -- she knows that two twenties is more than ten ones, but when she buys something I have to tell her how much to hand over, and I have to reassure her all the time that, for example, sixty dollars is more than she needs to get her hair set and buy a sandwich at Erik's Deli.
The bookj of sorts that I am working on is the book of Gloria. Every day I take pictures of things she does, or people, places, or things that matter in some way or another. I've been printing them out and putting them into an album. Since the part of speech she has lost most of is nouns and some verbs -- the more specific ones, the more general ones seem to be stored in the same place as the adjectives and adverbs -- she's already having trouble expressing what she wants. You have to do a lot of detective work. That's actually a big part of my job. I hang in there with her as she tries to explain things or tries to understand things. After the hard ones, I always make sure to point out that she just did a tremendous amount of work, and peatience and perserverance paid off. I've told her a few times what I think is probably true, that if she wasn't basically very intelligent and if she didn't work hard, she wouldn't be able to talk at all now.
So the book. It has pictures so far of Gloria at the stove, Gloria watering her plants, Gloria at the compost heap, Gloria getting the newspaper from the top of the driveway, Gloria at the hairdresser's and at the bank and Super Taqueria: of the Advil bottle on top of the refrigerator (Advil is the only medicine she self-administers and we actually kind of try to get her to involve us in it because sometimes she forgets how many she's taken), Nappy the cute little rat terrier, the coyote at the compost heap, her son, myself, and the other caregiver. Taken but not yet in the book are pictures of her shopping at various stores, eating at other restaurants, making her bed, choosing a science magazine, playing the piano, going into a restroom at the Gottschalk's department store on Main Street, pictures of the neighbor dogs and other such livestock (there was a bug, like a tropical crane fly, I mean huge by California standards and I'd never seen anything quite like it, dazed on her kitchen floor this morning, so I took a picture of it before I ushered it out the door). I've planned pictures of the rest of her family, her neighbors, the goats at the bottom of the hill, the bunnies, the quails, and other places she might go, things she might want. A picture of her holding each of her canes so she can point to the picture of the one she wants. A picture of her holding her purse. A picture of her putting on her gloves, her jacket, her sweater. Doing the laundry. Pictures of her favorite foods. In the long run, I also plan to clearly and concisely label things in the pictures, because odds are she'll be able to sound out words for a lot longer than she'll be able to recall them.
Besides the book of Gloria, I want to use the pictures to illustrate a weekly schedule. Monday is money day: so the picture of her at the bank goes there. Friday is the hairdresser's: so the picture of her reading under the dryer hood goes there. A picture of her youngest son on Saturday when he comes to respite her middle son. A picture of her oldest son on Sunday when he comes to do respite and to do immense projects on the immense property.
On other fronts, Absolute Magnitude didn't want the self-aware self-healing minefield story. "Not for us." And I still haven't heard from the three-letter publisher. I don't mean they haven't accepted or rejected it, I don't expect that, but two followup contacts asking where I am in the process -- I expect at least a tiny acknowledgement that I have asked, and a response on the order of "the acceptance/rejection is on its way" or "it's in a pile to be read" or "honestly, we don't know, it's around here somewhere, we're pretty sure of that."
On still other fronts, I think I'm kind of ill -- sore throat and other obnoxious symptoms. I should be in bed.
Gloria's condition is not sequel to a stroke, after all, as she had been suffering from language loss before the stroke. They call it Primary Progressive Aphasia. If you ever see "primary" in a disease, it means "we don't have the slightest clue in the universe as to what causes this thing." "Progressive" means "it gets worse and worse until you die." It's different from Alzheimer's in rather significant ways. The most important one is that she has not lost her memory and she has not lost the capacity to form new memories -- that is, she can learn things. This has consequences. Good ones -- we can establish new routines to fit changing circumstances. She can learn names of new people (and I, for her purposes, had become a new person). Bad ones -- she can hold grudges. She can hold on to plans or ideas that you wish she wouldn't. SHe has this idea that everything would be much better if she could just withdraw all her money at once and have it in a little pile to give to her children and anybody else she fancies (including me, which is an icky thought, if you think about it). Money denominations are a vague concept to her now -- she knows that two twenties is more than ten ones, but when she buys something I have to tell her how much to hand over, and I have to reassure her all the time that, for example, sixty dollars is more than she needs to get her hair set and buy a sandwich at Erik's Deli.
The bookj of sorts that I am working on is the book of Gloria. Every day I take pictures of things she does, or people, places, or things that matter in some way or another. I've been printing them out and putting them into an album. Since the part of speech she has lost most of is nouns and some verbs -- the more specific ones, the more general ones seem to be stored in the same place as the adjectives and adverbs -- she's already having trouble expressing what she wants. You have to do a lot of detective work. That's actually a big part of my job. I hang in there with her as she tries to explain things or tries to understand things. After the hard ones, I always make sure to point out that she just did a tremendous amount of work, and peatience and perserverance paid off. I've told her a few times what I think is probably true, that if she wasn't basically very intelligent and if she didn't work hard, she wouldn't be able to talk at all now.
So the book. It has pictures so far of Gloria at the stove, Gloria watering her plants, Gloria at the compost heap, Gloria getting the newspaper from the top of the driveway, Gloria at the hairdresser's and at the bank and Super Taqueria: of the Advil bottle on top of the refrigerator (Advil is the only medicine she self-administers and we actually kind of try to get her to involve us in it because sometimes she forgets how many she's taken), Nappy the cute little rat terrier, the coyote at the compost heap, her son, myself, and the other caregiver. Taken but not yet in the book are pictures of her shopping at various stores, eating at other restaurants, making her bed, choosing a science magazine, playing the piano, going into a restroom at the Gottschalk's department store on Main Street, pictures of the neighbor dogs and other such livestock (there was a bug, like a tropical crane fly, I mean huge by California standards and I'd never seen anything quite like it, dazed on her kitchen floor this morning, so I took a picture of it before I ushered it out the door). I've planned pictures of the rest of her family, her neighbors, the goats at the bottom of the hill, the bunnies, the quails, and other places she might go, things she might want. A picture of her holding each of her canes so she can point to the picture of the one she wants. A picture of her holding her purse. A picture of her putting on her gloves, her jacket, her sweater. Doing the laundry. Pictures of her favorite foods. In the long run, I also plan to clearly and concisely label things in the pictures, because odds are she'll be able to sound out words for a lot longer than she'll be able to recall them.
Besides the book of Gloria, I want to use the pictures to illustrate a weekly schedule. Monday is money day: so the picture of her at the bank goes there. Friday is the hairdresser's: so the picture of her reading under the dryer hood goes there. A picture of her youngest son on Saturday when he comes to respite her middle son. A picture of her oldest son on Sunday when he comes to do respite and to do immense projects on the immense property.
On other fronts, Absolute Magnitude didn't want the self-aware self-healing minefield story. "Not for us." And I still haven't heard from the three-letter publisher. I don't mean they haven't accepted or rejected it, I don't expect that, but two followup contacts asking where I am in the process -- I expect at least a tiny acknowledgement that I have asked, and a response on the order of "the acceptance/rejection is on its way" or "it's in a pile to be read" or "honestly, we don't know, it's around here somewhere, we're pretty sure of that."
On still other fronts, I think I'm kind of ill -- sore throat and other obnoxious symptoms. I should be in bed.
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